Rogue stem cell therapy operators are charging tens of thousands of dollars for treatments that are ineffectual or could even lead to more health problems and death, according to Australia's leading group of stem cell scientists.

Transcript

CHRIS UHLMANN, PRESENTER: It's perfectly rational for someone who is desperately ill to seek a miracle cure and that leads some to scour the internet for new treatments like stem cell therapies.

But Australia's leading group of stem cell scientists is warning that rogue operators are charging tens of thousands of dollars for treatments that are completely ineffectual or worse. Some can lead to more health problems and even death. And in Australia, a Therapeutic Goods Administration loophole means the number of dubious stem cell therapies is on the rise.

Her husband has to help her with even the most basic tasks - blowing her nose, doing her hair.

ANNIE LEVRINGTON: It's very hard. I can't do my hair in a ponytail. I have to get Eden, my husband, to help me. I can get the elastic around so far and then it gets stuck. The fingers won't open to put the elastic around to finish it off, so, um, I just end up getting frustrated and putting it back down.

LOUISE MILLIGAN: Annie has multiple sclerosis.

She was once a talented flamenco dancer and worked as a court stenographer. She first noticed something was wrong in 2002 when her fingers started to drop during long trials. Then, her feet started to go.

ANNIE LEVRINGTON: I noticed when I was walking my dog that I couldn't pick up my left foot. It started to drop after about half an hour of walking.

LOUISE MILLIGAN: Diagnosed with MS in 2007, it's been a gradual decline ever since. Desperate to do something to halt the progression of the illness, Annie took to the internet. She discovered the XCell-Centre in Cologne, Germany, which treated patients with their own stem cells.

ANNIE LEVRINGTON: I felt like I had nothing to lose. I wasn't afraid to die. I'm still not afraid to die in the search for a cure. And because of that, I went on my own to a country that I didn't speak the language, but felt that that was my only option.

LOUISE MILLIGAN: Things didn't seem quite right when she arrived.

ANNIE LEVRINGTON: I was suspicious when I walked in because there was no-one around.

LOUISE MILLIGAN: But Annie Levrington had come so far. She couldn't turn back. Clinicians harvested her bone marrow, then two days later, she was told stem cells were fed back into her body via a drip. She returned to Adelaide $15,000 out of pocket.

ANNIE LEVRINGTON: They said that I would feel the effects within the next three weeks to a year ... and nothing, I noticed nothing whatsoever.

LOUISE MILLIGAN: She went to see her neurologist and was shocked at what she learned.

ANNIE LEVRINGTON: He sent me to a haematologist who checked my bloods and concluded that there is no evidence whatsoever that I received a stem cell transplant.

LOUISE MILLIGAN: Annie had been the victim of a stem cell scam.

ANNIE LEVRINGTON: I felt really angry and ripped off and I feel like, um - really sad for people who are so hopeful. I think they're preying on sick people.

LOUISE MILLIGAN: After the death of a patient, the XCell-Centre in Cologne abruptly closed down.

IRVING WEISSMAN, STANFORD INST. OF STEM CELL BIOLOGY: It's hard to try to convince anybody with an incurable disease that they shouldn't try everything possible. But the answer is: there are people out there - and I don't understand their own morality - who look at you as a way to make an awful lot of money.

LOUISE MILLIGAN: Irving Weissman is a Professor at Stanford University in California and a pioneer of the field. He discovered human blood stem cells in 1992.

IRVING WEISSMAN: Everybody involved in stem cell research, even the legitimate scientists like me, have a high level of hope and ambition and excitement.

LOUISE MILLIGAN: Visiting Australia to help promote that hope and excitement, he's also here to warn of the dangers of the quackery that he believes invades stem cell therapy more than almost any other area of medicine.

IRVING WEISSMAN: I Googled "stem cell" and "therapy", and the first 200 I saw were fraudulent therapies. No science behind them, no published work.

LOUISE MILLIGAN: Stem cell biologist Professor Megan Munsie from the University of Melbourne has now dedicated her work to exposing those frauds who bill patients up to $70,000 for ineffective therapy.

MEGAN MUNSIE, STEM CELLS AUSTRALIA: And I think that's what I object most about is the - sort of the commercialisation of a lot of these treatments, really the selling of hope and exploiting people who really don't feel like they have many other choices.

LOUISE MILLIGAN: Associate Professor Munsie also cautions that the world of internet health is plagued with phonies.

MEGAN MUNSIE: I think we have to be very aware of Dr Google and I also think we have to be aware of patient testimonials. A lot of these websites do - particularly those overseas, do use statements from patients who've had treatment. And it's terrific that they feel - have had benefit, but what we don't know is if that benefit has continued for a long time.

LOUISE MILLIGAN: Dubious stem cell treatments aren't just something that happens overseas. A loophole in the Therapeutic Goods Administration regulations means that if a local doctor injects a patient with their own stem cells, the TGA can't regulate the practice. Stem cells Australia says there are now 40 local doctors using stem cells for anything from MS to orthopaedics to autism with no clinical evidence that they really work.

MEGAN MUNSIE: The concern is we don't really know. We're not learning from it. People are prepared to put themselves at risk to participate in these experimental treatments, but we're not finding out any answers, we're not learning from it.

LOUISE MILLIGAN: Professor Irving Weissman saw an American teenager who'd been given stem cell therapy in the Dominican Republic for a hole in her heart. The girl had clots on her lungs caused by the procedure and was near to death.

IRVING WEISSMAN: There was no possibility that those cells could heal a hole in the heart. In the hospital, she died on the table, was shocked back to life and they've given an act of faith, essentially, that this doctor who promises to cure them will cure them. But in the end, the doctor gets off scot-free, the family loses, whatever, $100,000, $125,000 for a therapy they couldn't cure and the girl almost died of the disease. So this is a warning that you can have horrible consequences if you go in for a therapy that's unproven by somebody whose main motivation, I'm afraid to say, is likely to be your pocketbook rather than your health.

LOUISE MILLIGAN: Annie Levrington is now just trying to keep her MS at bay with diet and exercise. She feels burned by the stem cell scam, but says the desperation of patients trying to fight an incurable disease can't be underestimated.

ANNIE LEVRINGTON: You can't not try. You've got to keep fighting or die trying. That was how I felt.